February 29th 2024 – the rarest day of all!

Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.


Join the movement to raise awareness and have some fun along the way!

Your involvement matters to us because it shows:

  • strength in numbers
  • community resilience
  • and our collective power to change the future of rare diseases

1. Watch

Watch and share this video of our warriors on your social media channels and with friends and family to raise awareness! https://youtu.be/oHR5ZfcnVvE?si=pUNK23faWE4tf6SC

2. Listen

KAND patients have a strong affinity to music, and find it regulating for their disorganized nervous system. We’ve created a special playlist with some of their favorites! So turn up the volume, grab a partner, and dance the night away to honor our warriors’ rare and relentless lives!

3. Order

Visit our Bonfire store to order new t-shirts benefiting KIF1A.ORG and raise awareness!

The zebra is the official mascot for rare disease patients. Historically, medical professionals were told that when they “hear hoofbeats,” they should not expect to see a zebra. In other words, look for the more common answer, a horse. Now, we know that one in ten Americans is actually a zebra (rare disease patient)!

4. Update

Update your Social Media Platform profile pictures and banners!

  • Right click the images below to save image on your device. Then upload the image on your social media platforms.
  • Send your picture to social.kif1a@gmail.com to get a personalized rare disease day picture and frame.
Facebook Profile Picture Frame
Facebook Profile Banner

5. Share

Share these images and facts across social media channels like Instagram, Facebook, X, LinkedIn, and TikTok!

  • Right click the images below to save image on your device. Then upload the image on your social media platforms.

6. Follow

Follow along with Rare Disease Day organizations, events, and advocacy on Capitol Hill ~

7. Donate

Donate your spare change to KIF1A.ORG

Our relentless superheroes face a ruthless villain. KAND robs our children of the ability to walk, talk, see, and often even eat or breathe. But we have hope because of people like YOU. Life-changing and life-saving treatments are within reach, but we can’t accomplish our mission alone.

Learn more about the impact your donation makes on KIF1A families today. Donate safely to KIF1A.ORG, a registered 501(c)(3) nonprofit. Learn about other ways to give, including by check, here.